Helping children and families before, during, and after initiating CPAP/BiPAP therapy

1. Helping children and families before, during, and after initiating CPAP/BiPAP therapy Rebecca Coffman, CCLS, CTRS *Formerly of Cincinnati Children’s Hospital Medical Center

2. Objectives • Learn about PAP and what type of population utilizes this treatment • Gain knowledge of the key information that is helpful for the Child Life Specialist prior to the patient being admitted inpatient as well as information for the family to know in advance • Understand the Child Life Specialist’s role and the Respiratory Therapist’s role during the PAP process • Learn how to utilize play and therapeutic interventions to assist patients and families through the initiation process • Understand the tools families need to continue working with their child after discharge

3. Outline • Background • Preparation • Acclimating the patient to PAP • Empowering the family when it is time to discharge • Questions

4. Background • What is PAP? • Why do pediatric patients utilize this treatment method for OSA?

5. What is PAP? • PAP is positive airway pressure. There are two types which include CPAP(continuous positive airway pressure) and BiPAP(bi-level positive airway pressure). • CPAP is the continuous delivery of air at a constant pressure during inhalation and exhalation. • BiPAP consists of two different pressures, one at inhalation and the another pressure of air at exhalation. • PAP is typically used to treat obstructive sleep apnea (OSA). • OSA is a type of sleep related breathing disorder consisting of partial to complete upper airway obstruction.

6. Why do pediatric patients utilize this treatment method for OSA? • OSA affects 1-3% of children • Children who utilize PAP for OSA were not successful with the adenotonsillectomy or are not a candidate for surgery • PAP is a non-invasive breathing treatment

7. Preparation • Information you need to know prior to working with the patient and family • How you can prepare the patient and family for the visit • The respiratory therapists’ role

8. Information you need to know prior to working with the patient and family • Call the family in advance to gather information about the patient and family dynamics • What are your child’s interests and motivators • Find out the child’s developmental level and if they have any sensory sensitivities • Ask the family how they get their child to comply (brushing teeth, wearing glasses, cleaning their room, etc) • Ask about previous hospital experiences and how their child copes • Comfort items

9. How you can prepare the patient and family for the visit • Prior to admission: • Ask the family if they have any questions or concerns about the PAP acclimation process • Discuss with the family the importance of communicating with their child prior to coming to the hospital • Discuss your expectations with the patient and family

10. Acclimating the patient to PAP • The Respiratory Therapists’ Role • Familiarization and desensitization • The key to rehearsal and modeling • Practice, Practice, Practice • The use of incentives and rewards

11. The Respiratory Therapists’ Role • Set-up CPAP or BiPAP equipment • Provide appropriate masks to fit the child • Can provide an extra mask for medical play • Adjust the machine pressures • Provide education and assistance with the PAP machine • During the initiation process they can help provide alternative ideas if patient is having trouble with the acclimation process

12. Sleepweaver Full Face Shield Nasal mask Nasal Pillows Nasal Mask

13. Preparation by age/developmental level • Infants and toddlers • Provide preparation to family • Offer opportunities for children to explore medical equipment • Demonstration of materials • Comfort items • Preschoolers • Provide preparation using photo preparation and relevant medical equipment • Emphasize the child’s “jobs” • Provide choices and options

14. Preparation by age/developmental level (continued) • School Age • Provide more information such as the process and reasons why PAP is important for their health • Provide them options and choices such as which mask they would like to wear • Discuss coping skills • Adolescents • Encourage them to ask questions and advocate for themselves • Offer them the opportunity to discuss how this will fit into their social life

15. Familiarization and Desensitization • Show the patient and family the mask to see and touch. • Demonstrate how the mask fits on a doll or stuffed animal. • Depending on the age of the patient, decorate the mask and make it fun!

16. Familiarization and Desensitization • Start slow, holding mask to patient’s face. • Have the headgear and mask fit loosely before continuing to a more secure fit. • Utilize counting and visual timer. • Have a mirror or camera available to show the patient what the mask looks like when on their face. • The child life specialist or caregiver can also practice wearing the mask and taking turns with the patient.

17. The key to rehearsal and modeling • Practice with the doll or stuffed animal to show the patient how the mask fits. • Have the caregiver also practice with the child, taking turns wearing the mask. • Model for the family ways to encourage the child and set their expectations. • Provide support to the family because they are the ones who have to continue this at home.

18. Practice, Practice, Practice • Give the child control by allowing the patient to pick a favorite activity to do while they practice. • Practice wearing the mask without flow for longer periods of time (15-30 minutes). • Once the child is comfortable wearing the mask for longer periods of time have them repeat this process with the airflow. • If the patient takes naps, have them practice during this time. • Encourage the parents to set a schedule to practice with the patient throughout the day.

19. The use of incentives and rewards • Make sure expectations are set prior to utilizing incentives and rewards. • Sticker charts • Prizes • Praise and encouragement • Allow the child to choose what they want to work towards. • Point systems/token economies

20. Cara's Story At night you will wear a mask to help you breathe. This will help you feel well rested in the morning.

21. Cara’s bedtime routine 4. Put on your blue CPAP mask. Take a bath. Put on your pajamas. Call Grandma and say goodnight to Tillie, Maggie and Frank! 5. Choose a book to read. 6. Put the tube on the CPAP mask and turn on the airflow. • 7. Goodnight Cara!

22. Wear your mask 6 nights in a row and you will get a prize!

23. At night Mike wears a BiPAP mask. This helps him breathe and feel rested in the morning. Mike’s doctor really needs him to wear his mask all night to be healthy. Mike I need you to wear your mask at night.

24. When it is time to go to bed, Mike brushes his teeth, puts on his t-shirt and shorts and wears his BiPAP mask.

25. If Mike wears his BiPAP mask all night long he will get a token! Mike can use his token to choose a prize. Pick your lunch Diet Sprite TV Time

26. Incentive chart

27. Empowering the family when it is time to discharge • What they need to know before going home • Set and enforce the rules around the use of the PAP machine • Administer rewards and praise • Make sure all caregivers follow the same routine • Sibling response to PAP • Parental sleep habits and/or modeling of their own PAP use • Establish a routine for bedtime and naps

28. TIPS FOR GOING HOME with continuous positive airway pressure or bi-level positive airway pressure (CPAP or BiPAP ) 1. It may take time for your child to adjust to the mask. It is important to keep trying and be consistent throughout this process. 2. Continue to incorporate your child wearing the mask into the bedtime routine. For example; brush teeth, put mask on, read book, then bedtime. 3. Provide lots of praise and encouragement each day your child wears the mask. 4. Provide choices so he/she feels like he/she has some control over the situation. For example: “Do you want to put the mask on by yourself or do you want me to put it on you?” “What time do you want to put your mask on tonight?” • “Do you want to watch a movie or read a book after we put your mask on?” 5. Predictability is important. Make sure your child knows what time his/her bedtime is and when he/she needs to put the mask on. 6. You can utilize incentive charts, sticker charts, or prizes for the first few weeks. Make sure you slowly wean your child off by having him/her wear the mask for more nights in a row before he/she gets a prize. For example: For each night your child wears the mask he/she earns a sticker and at the end of the week he/she gets a prize. If your child is successful with this, have him/her earn stickers for two weeks before receiving a prize. 7. If your child cannot wear the mask the entire night, continue to work to wear it for a little bit longer each night. It may take time for your child to adjust to wearing the mask. Stay positive and keep trying.

29. Unique situations • Patients who do better in their own home • Utilize the hospital sewing room to adjust the fit of headgear • Advocating for a sleep aid • Patients who wear glasses • Patients who are fearful that it is the anesthesia mask that will put them to sleep for surgery

30. Questions? Questions??? Comments???

31. References • Harford, K.L., Jambhekar, S., Com, G., Pruss, K., Kabour, M., Jones, K., Ward, W.L., (2012). Behaviorally based adherence program for pediatric patients treated with positive airway pressure. Clinical Child Psychology and Psychiatry, 18(1), 151-163. • Kirk, V. O’Donnell, A. (2006). Continuous positive airway pressure for children: A discussion on how to maximize compliance. Sleep Medicine, 10, 119-127.  • Marcus, C. L., Davidson Ward, S.L., Mallory, G.B., Rosen, C.L., Beckerman, R.C., Weese-Mayer, D.E., Brouillette, R.T., Trang, H.T., Brooks, L.J. (1994). Use of nasal continuous positive airway pressure as treatment of childhood obstructive sleep apnea. The Journal of Pediatrics, 127(1), 88-94.  • Nixon, G., Mihai, R., Verginis, N., Davey, M. (2011). Patterns of Continuous Positive Airway Pressure Adherence during the First 3 months of Treatment in Children. The Journal of Pediatrics, 159(5), 802-807. • Pediatric Masks. (2013). Retrieved from http://www.healthcare.phillips.com/main/homehealth/sleep/pediatricmasks/ • Slifer, K. J., Kruglak, D., Benore, E., Bellipanni, K., Falk, L., Halbower, A.C., …Beck, M., (2007). Behavioral Training for Increasing Preschool Children’s Adherence With Positive Airway Pressure: A Preliminary Study. Behavioral Sleep Medicine, 5, 147-175. • Treating Obstructive Sleep Apnea in Children with CPAP or BiPAP. (2008). Retrieved from http://www.complexchild.com